shingles

[ggrana]

hello all, I’m just getting over the shingles, it’s been three weeks of torture. Anyone else on Jakafi get the shingles? I was wondering if they had anything to do with this . I’ve been on Jakafi for a year now , 20 mg a day

[Mazcd Partner MPNVoice]

hello ggrana, I am so sorry to hear that you have had shingles, I hope that you are now feeling better, this information in our booklet might help you: Ruxolitinib (Jakafi) treatment has been shown to be associated with increased risk of infections varying from simple chest and urine infections to reactivation or occurrence of more serious infections such as shingles, hepatitis, TB and rare infections including a disease called Progressive Multifocal Leucoencephalopathy. mpnvoice.org.uk/about-mpns/...

[ggrana in reply to Mazcd]

Thank you for that info mazcd, I sure wish I knew this before. I was never advised to get the vaccination , maybe that would’ve made the symptoms less severe. I am finally starting to get better after three weeks but still in pain especially at night .Happy Holidays to all !God bless ! thank you to those who have responded to me

[EPguy in reply to Mazcd]

The Shingles vax should be prominent in the prescribing info, but I didn't see it in my cursory look. I happened to get that vax a few years ago after my brother got shingles

On the infection risk, this has a good summary. It's a particular concern with MF, and according to here, attributed to a drop in WBC. For PV reducing WBC is usually a good thing. WBC is often dose limiting with IFN but not usually a distinct risk factor there.

"It’s common for people taking ruxolitinib for myelofibrosis to be at an increased risk of getting an infection. This is less common if you take ruxolitinib for polycythaemia vera.

Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, headaches, feeling cold and shivery and generally unwell."

cancerresearchuk.org/about-...

Most MPN pts will know of any WBC drop since we get blood counts regularly. But I asked my Dr about it and he said there are other goings on with WBCs on Rux separate from WBC levels.

[Ebot]

Hi there. As Maz says the leaflet is worth reading. I was advised to have the shingles jab before starting Jakafi / Ruxolitinib. Shingles can be really nasty. Do hope you’re feeling better.

[akonline]

Hi Ggrana, yes I got shingles while on Jakafi too! Seemed totally out of the blue at the time. And I agree, it was very painful and seemed to take forever to heal. Still have the scars today. Wishing you a speedy recovery!

[ainslie]

6% on Rux allegedly get shingles, I did, the solution is to get the Shingrix vaccine which is very successful, over 90% if I remember correctly. For those that can’t get Shingrix the trick is to treat the shingles immediately it starts, I used to have a box of Aciclivor antiviral handy just in case, if treated quickly less pain and shorter. But the best plan is get Shingrix.

[Golfersmom]

I got shingles too! I was in my early 40s & hadn’t been on Jakafi but about 3 months when I got them. The script info pamphlet from my pharmacy stated that it could cause shingles. I went off the Jakafi & started Pegasys.

[Bobadog]

Hi,really sorry to hear you got shingles.I wasn’t allowed to start Rux (UK)until a couple of weeks after I had received the second Shingrix vaccine, to ensure prevention. This should be a standard procedure for folk taking Rux?

If under 65yrs in UK ,you require a letter from your haematologist for GP surgery who administers the vaccine,stating why you need it .

Well worth it.

All the very best for a full recovery,

Bobbie

[ggrana in reply to Bobadog]

Wow, you are very lucky you got the vaccine and are protected from his terrible virus. I was never offered it by my hematologist and I am 54 years old. The US needs to do it like the UK. Thank you, Bobbie for your reply.